Eighteen years ago when our daughter came into this world she brought with her a joyful universe. Since that blessed day we have been gravitating in this universe enjoying every minute in it, amazed at this miracle that was given to us, this wonder that was changing every day, growing, adding layers of knowledge, wit, and beauty in every aspect. We used to say to each other that Adela was the only thing that we did to perfection. Of course all parents believe the same, but indeed she was perfect to us!
She was a model student in school, she enjoyed reading, learning, being curious about all the things around her. By the third grade she was accepted in the Talented And Gifted program for all study subjects. In the fifth grade she started playing violin. Outside school she went to gymnastics, ice skating, and tennis classes, and enjoyed water skiing, bicycling, or roller skating in the weekends. She was a daring spirit always willing to try new things.
Then seven years ago when her fist seizures happened some stars in our universe became cold. As painful as it was we didn’t despair right away as we read that for most people the seizures can be controlled and they live an almost normal life despite certain limitations. But Adela is not like most of the people with epilepsy. On the contrary, she is among the very few people in this world who was destined to an extraordinary cruel disease named Lafora.
She was diagnosed with Lafora in June 2007, after six years of seizures and a long and painful trip through a large panel of antiepileptic drugs in an attempt to control what the doctors called “idiopathic epilepsy”. During all this time we saw her wit, happiness, and exuberance slowly fading away. Initially we blamed her physical and cognitive regress on the side effects of the antiepileptic drugs. As the years passed her sharp mind that we were so proud of entered a dark zone. Things that were so easily done before became painfully hard. She had to stop playing the violin, and all the other activities she enjoyed. Friends disappeared. While kids of her age open the door and step into the real world, Adela’s world closes around her confining her to her room. While other kids become independent Adela is relying more and more on other people.
She recently turned 18 and she is looking forward to starting her adult life unaware of how sick she is. We do not have the courage or the heart to tell her the real diagnosis and the dismal prospects of the disease. She is a high school senior, she goes to school for 4 hours each day with all the accommodation offered by special ed program. Some days though, she is too tired to attend classes and she spends her time reading or watching TV. She can still talk coherently (sometimes with breaks between words), she understands her reading, but the smallest amount of homework can tire her to exhaustion and gives her lots of myoclonic seizures that she calls socks. She stumbles a lot, has “drop attacks” and losses muscular tonus in her arms making eating, drinking and writing very frustrating.
For the rest, each of the stories written here is our story and there are no words to convey the cruelty of this situation. What we held dearest to our life, the light and soul of our existence is melting away each day.
– Provided by Gabriela & Edmond Richer